Fear about my mum's next scan

[catlady91]

My mum is having a PET scan at the end of July. Her last scan was a CT scan in mid May which showed that the tumour had shrunk by half. The doctor said that it was "excellent" news. My mum started immunotherapy (durvalumab) in June. I'm worried that there won't be any progress or the cancer will have progressed or God forbid spread. My mum finished chemo (cisplatin) and radiotherapy in April. My mum's doctor said to her not to worry about the scan. I think I'm more worried than my mum. I know that they have to do scans as it's the only way to check on things and I know everyone goes through it. I've also heard about pseudo regression from chemotherapy. How common is this? By the way my mum was diagnosed in Feb with 3B non-small cell, squamous cell lung cancer. Also do doctors change the staging for example if the cancer shrinks i.e. can the doctor say it's gone from 3B to say 2B or is it always referred to by the original stage which it was first diagnosed regardless of improvement?

[Tom Galli]

Welcome here!

First off, durvalumab is good stuff! We have perhaps the most complete survivor-authored resource on durvalumab anywhere. Read through this material to learn about how it works and how to deal with side effects.

You are right, scans are needed to assess progress, and I do hope in your mother's case that progress comes in the form of shriveled up former tumors. We all worry about scans. I've been no evidence for disease (NED) (our term for "cure") for 16 1/2 years, and I still receive scans and endure scanziety--our word for worrying about scans.

Pseudo regression is real and occurs in the first several scans after starting immunotherapy. The swelling happens as a response of the immune systems attack on the cancer cells and it is a very common condition. Staging is only important at diagnosis because it drives treatment decisions. Physicians do not normally recast stage numbers after treatment. If the treatment works then we are termed NED. It it does not work, we received additional treatment but in either event, the diagnostic staging is not adjusted.

Your mom and I share a diagnosis (Stage IIIB NSCLC squamous cell). I do hope we also share a common outcome.

Stay the course.

Tom

[catlady91]

Thank you so much Tom; you replied to one of my previous posts and gave me a lot of positivity. The doctor said to my mum not to worry too much about the scan. Maybe that's why they're doing the PET scan, because the tumour size isn't the main indication of progress especially if there's pseudo-regression. Its reassuring to know that durvalumab has good outcomes. My mum asked the doctor a lot of questions about it, but he didn't seem to know much. Is this because immunotherapy is still a relatively new treatment? 

Again thanks so much for your answer! Your story is incredible! 16 and a half years ago treatments for lung cancer were so limited, so it's incredible that you were cured!